The wiring of my patience and compassion fuses.

Reflect Peace ! 

Chronic Illness and chronic Pain isn't something that everyone has a good understanding of. Friends and family will nob and say “I understand”. Do they really understand that you, yourself, really don't even know yourself after years and years of struggle. Even as your body physically or mentally suffers so does your mind and all it's circuits.

The suffering eats away a bite at a time from your patience fuse, compassion fuse and your agitation limit. You become easily annoyed by things that aren't appropriate and you take it out on the ones you love the most. You don't even recognize yourself some days and all you can do is cry in private about how you miss the pain-free and chronic suffering self. You can only say your sorry so many times to those loved ones before they too are “done with you” and just see that your actions repeat themselves when you are at your worst suffering. As much as you try to control yourself, these short fuses and shortened limits are just built into our design now. The design of ourselves which now includes chronic illness.

For all those in our lives who do understand that we NEVER MEAN to be what we have become in those explosive moments toward you. We are trying with all our might to lengthen, cultivate, and nurture those fuses back to their proper lengths. It just takes time and discovering mechanisms which work for each one of us. Please hang in there with us and know that we need you. We need your HUGS, LOVE, understanding, tolerance, support, and rubs on the back definitely don't hurt.

Healing touch does wonders for us during these hard times. Tiny, butterfly, rubs on my back when I have blown my lid are a gift and I thank you for those.

Reacting peacefully when we have gone off the deep end and are in a crazy state about something ridiculous will set our mind at ease if it is something you are strong enough to do. Reflect peace back at us and don't let us ruin your calm. Be contagious and rub off on us. Let us catch some of what you have to give. So choose to give stability, tranquility and peace in a time which is probably a time of suffering for us. You will see a huge difference in our dynamic and we will be so thankful for the help in rewiring our fuses to be a bit longer and better suited for dealing with our Chronic pain/illness and suffering.

Thank you to all those supporters out there. Those who stand by our sides during moments of un-peace. Who take those moments when we crack and help us through them and don't take the easy road and just walk away. Your hand in ours, whether figuratively or physically is much appreciated and needed.

Thank you !

 I dedicate this post to my loving husband (who mostly gets it right). He, like any other caregiver, could use a bit of advice here and there with how to deal with that person (the person I least know in myself) that comes out every now and then with a very short fuse. 

Success - Just changed at heart.

My father always pushed himself beyond his limits because he was never satisfied with less than the best from himself, and he was never going to be happy than less than the best from “his girls”.

He pushed us to get good grades at ever level of school. There was no question whether we were going to college or not. Whether we had the money or not we were going to earn our way or die trying. It was important to him that his kids had a college education and become “successful” in their lives. He had been the first in his family to have a college degree and he wanted the best for his children.

When I graduated college I pushed myself the same way. I worked myself to the bone taking assistant-ships far away from my home. I drove two hours in and out of the city working everything I could get in the Profession I had chosen. I worked 24 hour days sometimes to come home and sleep 2 days to recover. I received amazing hands-on experience that first year as a Photography/ Applied Media Arts graduate. Then I got my first job with a large Photography Corporation. I worked for them for 5 years. They hours were very long and I drove all over the US photographing family s and children portraits for them. It was amazing experience and long and physical days. I was in amazing shape and still young with endurance I can't imagine having now! After 5 years I got a job with a private Studio and worked with some amazing Talents in the Portrait Photography business. At this time my own Photography business started growing. I was working 6-7 days a week photographing for the Studio on the weekdays and for my business on the weekends doing weddings and other small jobs. My income was good and I has been self supportive for 7 years. I had lived in my own 3 bedroom townhouse for all of this time and enjoyed the freedom of a good income.

One day I found myself driving to work and unable to focus on the road because of a nagging pain in my eyes. By the time I got to work I was almost paralyzed in pain in my eyes, head and left arm. I was in bad shape and ended up in the ER that day. There were many days like this to come. This condition worsened and turned into a Paralyzing nerve/ pain/ migraine condition which was un-namable by 15 specialists in the next 2 years. I continued to try to hold my job for months. I tried my best to hold other small jobs for small clips refusing to give up and file for disability even though I was being advised to. I was now bedridden and being fed through a straw. My husband was my caregiver and it was all he could do to keep it together upon seeing his wife in such a sad state.

In a short time I had lost everything. My career, my fitness success, many of my friends, my drive to live, my drive to succeed and my ability to even do daily functional tasks. It was a shocking life event. In this time I had several near death experiences.

I was affected emotionally by these times. My views on life and what is important changed ! My views on people and their true natures changed as well. I could see trues in this world ,which before these events had been hidden from me. At seven years into my illness I couldn't know what might happen to me in the future. I Felt lost and as though I had no direction. As though anything good for me would surely have been left in my past. My photography, my career , my addiction to the gym and fitness itself. I feel into a severe depression. Time passed by an inch at a time. It was slow and my depression was heavy. I wasn't myself and my decisions were of another spirit all together.

At 9 years a change in location brought a much needed more away from bad influences and a turn into a better environment over all. My mind started to clear a bit and all of the sudden I felt inspired again. I came to believe over a long time that these trials of the human spirit and strength of the human machine, are meant to mold us for some thing.

I believe that when Aromatherapy found me it was in stages throughout my illness. Smells found me First in a destructive way during my worst migraines to date. That feeling you get when a migraine is just starting and every smell is strong and awful. It sends you reeling over the edge into migraine hell. Then I discovered Essential Oils through a Chinese Acupuncturist In Pennsylvania. I don't remember the first time I bought Peppermint Essential oil but it changed my life with its healing powers every since. My second friend of pain was Frankincense. Thank goodness.

As I walk my path with this new education into herbal medicine I still am a chronic pain sufferer. I still have horrible days and still get paralyzing pain. I am reminded that my body is still completely right inside this exterior which is trying to move forward with having a “normal life” again. However, I am in a new place mentally and take time to listen to what my body is telling me. I take much more time with myself than I did before. I am quite more often in order to know what I need.

I also am geared toward a goal which is so much more different than the photography which I was once dedicated to. My goals include trying to help others in ways which I needed help and still need help today. This puts me in a unique position and perspective to understand what other peoples bodies might be saying to them. Maybe they don't hear it and maybe I have learned a way of listening which they could benefit from. I do hope so.

I am still that hard-working,dedicated, and pushy girl that I always was and still strive for success it is just that the success I am seeking isn't solely based on the number of dollar bills I am gathering. I Feel successful when someone tells me I am helping them. I Feel successful when the blend I have made is amazing and therapeutically active. I also feel successful when I am eating right, in good shape, treating my body with respect and surrounding myself with good people and healthy things.

I owe my point of view, my success (ALL OF IT) to my husband. He is a man I look up to, respect , and love so very much. He has given me so much all of these years and without his love and support I couldn't have all that I do today in terms of success.

My hierarchy of the definition of success has changed.....

SUCCESS:

• When someone tells me I have helped them.
• A blend is exactly what I meant it to be or better !
• I am feeling good because I am honoring my body.
• I am meditating and keeping myself mentally healthy daily.
• My marriage is healthy and happy
• My friends are part of my life and we are keeping in touch.
• I am earning at least some money to help contribute (not yet but I have hope)

Giving to ourselves the gift of , EXTRA TIME !

Making decisions... 

When I come upon a decision to be made it is a slight bit different than it used to be. I remember a time when there wasn't much to it. 
Do I want to go there, do this, eat this? 

The questions were fairly easily answered through the day and there was very little energy expended or stress put into it all. However, when you are chronically ill or dealing with a very undependable condition in your life there are things that could change at any moment. When I ask myself to make these decisions which at one time seamed simple I become fearful, worried, and I tend to over think them in many ways. 

A good example is traveling. I have an amazing opportunity presenting itself to me right now to go to a seminar and learn more in my trade. It involves much travel by air and time away from home. Because my body doesn't always cooperate and I suffer migraines and severe pain without warning my mind immediately is thinking out the possible scenarios that might take place if I consider going to this event. I think about all the special items I must take a long which involve special diets I must maintain while away, medicines and vitamins which will help me to stay healthy while there. It will include many different things which I will want to make sure to pack and I will start to worry that I might forget something which in the end will be missed. 

I have traveled much in my past. Especially for someone who has a chronic illness. However, this trip means so much to me I would hate for it to be something I would fly far from home to enjoy and pay much money to attend and get all the way there and find that my body isn't playing along. Those of you will chronic conditions know exactly what it feels like to want to make plans and to hold back due to a condition that you have which is unpredictable. 

I find in my life many decisions I am coming upon which are like this. They are not so easily made because of my own body which has become very unpredictable. I remind myself that it is okay to take things slowly and one small step at a time and not to rush ahead. I have small talks with myself and tell myself over again that I do not have to be one in the crowd and take many classes at a time as "they do" in order to get furthering education. I get very excited to move forward with my life. I get sad sometimes that I must pace myself due to "limitations" I now have. However, it is best I remember these limitations and embrace that they are now part of me than to RUSH ahead and regret that I have done so by needing to recover with a massive migraine later for days upon days of suffering. 

Today I am going to take this moment to remind myself  and others out there like me: 
Even though we stress over these types of decisions because there are things about our conditions which are unpredictable .....we must also remember that we CAN still do the things we love and want. By planning ahead and taking our time... We can make a check list to remind ourselves of the things we must take with us on our outings. That way we feel more "put together". 

As much as we want to "run with the crowd" we are special in many ways. We have a perspective that many don't have and we have strength in us that has been finely tuned to deal with our suffering. So, this --added time-- we are going to allow ourselves to prepare to make these decisions, is NOTHING compared to the suffering we have endured. It can be easy if we let it. 

We are going to GIVE ourselves this extra time.....so that we can still HAVE the trips we want. Hopefully we can alleviate some of the stress we associate with making decisions in our lives, due to the uncertainty that our bodies have added in. 

Healthy coping is a VICTORY !

You never know what life is going to through you a loop. Especially when you are a chronic pain or chronic illness patient. For many months now, almost a year, I have been feeling as close to normal as I have been in 9 yrs. All the surgeries that I get to stove off pain were up to date. My medications were as much in balance as I could ask for. 

I had EVEN started upon a new journey in my life with attending school to obtain an education in a new field of interest. One that excites me beyond explanation ! Things were flowing for me in these ways. Even things in my marriage were looking better and finding a balance it seamed. 

Its hard for people to believe me when I tell them that I am ill at these times in my life because I appear fine from the outside. I function seam to be able to drive around and clean my house. I am able to smile again and laugh. They just don't see the me that was when I was stuck in bed and in the bathroom sick with pain. My attitude is optimistic and bright. My personality is a complete 180 degree turn from the person that I am when I am nagged by a day in and day out severe pain which allows nothing but it's attention. 

So, you understand when I say, that I was severely thrown off course when a few months ago my surgeries wore down and I was taken off guard by the monster that had so long been dormant. It came back with a vengeance. The strength of it's grasp was so strong on my once again and I had forgotten so many of my wonderful coping skills that I just folded emotionally under it's weight. I became a person I have a foggy memory of from long ago when my illness began. At the beginning, of course, we had no handle on what was happening with my body so there was no understanding between it and myself. At least this time when it came back, after the initial shock, I took into hand once again to find and reconnect with healthy coping mechanisms once again so that I may deal with the pain in my life. 

I have learned so much about being strong and having patience from pain. There are times in our suffering and sadness when we wish it would all just go away NOW. It is this instant relief that we are searching for in a pill and sometimes many of us chronic sufferers are looking for it through self-medication (alcohol, drugs..). Who can blame anyone for wishing for it's end. 

However, there is something to be said even in this instance about cherishing the journey and not rushing to the outcome. We as humans have no choice but to take the path of living our lives if we so choose to do it the natural way. Each sensation is showing us something -- teaching us something along the way. 

So, with this said, at times of severe suffering  I am able to close my eyes and breath and know I am alive. I am able to remember that every thing in life is temporary and that this will not last. Tomorrow will come and it will be different. This moment will never come again and will only be this moment for right now. In this I take comfort. I choose to allow my senses in that moment be distracted if I am able. I say "if I am able" because sometimes the pain is too severe for this type of distraction. However, sometimes a subtle scent of essential oils will focus my mind and something rough to the touch or soft or textural in some way will distract my hands...and with these sense tools I am able to meditate. I can bring my mind to these things and bring it away from the pain in my nerves. I can bring my mind to my breath and in-hail a pleasant blend and it will trigger a feeling--- that feeling with redirect my brain. This technique doesn't fix my pain but it lifts my spirit and helps me cope with a huge challenge. Coping in a healthy way, in itself, is a VICTORY.  

A New Year - A New Chapter to my story.....

2014-- is here. Looking back over the year it was a tough one just like the one before. 2013 had many challenges for me. Both physical and mental.

Finding doctors is always hard in a new city. Here in az is no exception. The year before it was WI and searching lead to some really great medical care there. However, here in AZ it has been a bit more involved. I have gone through several psychiatrist just because their offices keep closing and now I am frustrated with the new one I have found because I am not sure they are the place for me.

Before Chronic pain I wouldn't have worried so much about the mental health care I was getting but with being in pain daily I absolutely must keep on top of my mood and make sure I am not falling into negative thinking. It causes me pain and more struggle to do so.

So, I continue with this challenge of getting my mental health in order along with finding a new Neurologist, Dentist....and so on.

What I see for this new "chapter" of my life is that I will for the first time in 9 years take steps toward my future career again. I don't see my career the same way as I once did. I have chosen YOGA and a healing path so that I may keep my health in check and at the same time help others who are ill or struggling.

I will start a yoga therapy program at Southwest Institute of Healing Arts end of January. Starting with Aromatherapy. I am both scared and excited at this change in my life. I think often that I might not be able to handle it and might end up having to (once again) give it up and try something else. What I have this time is a back up plan. If I am not well enough to actually do the yoga part of the training herbal-ism and aromatherapy very much interests me. Whats great about this school is they offer all of that.

How did I come to the realization that YOGA was something I wanted to DO. Well, I gotta tell ya, over the last many many years of being ill i wasn't drawn toward anything. Nothing at all. I have been down about so many things i have lost the ability to do. My husband asks me over and over what I will do with my life and he so badly wants to see me doing more than just lay on the couch in pain. I gotta say so do I. Thing is there was this barrier to doing something....to making that decision of what it might be. Well, because it had to be possible...physically and mentally possible for me. I was feeling pretty weak and incapable.

I added yoga back into my life about a year ago and found myself getting stronger and more focused and feeling more drawn toward it than ever. It brought something for me in terms of physical healing and also mental focus. Unfortunately, the migraine and pain meds I am on create quite a fog. It makes it very hard to think straight about anything. It actually became so hard for me to think that I choose not to.

I addressed this problem with a doctor I see here and he was just wonderful and my savoir. He said that "it is no way to live feeling in a fog" . he gave me medication to help me focus and even though I was reluctant to add anymore meds to my routine I did and am so thankful. I have regained my art again and reading again. I haven't read in 9 yrs. Not articles...not books ....nothing. Now I read all the time so that I can learn. and I LOVE IT.

So, I began my second journey with yoga in about May 2013. My first journey with Yoga was years ago before I was sick. From '98 to about 2004 I enjoyed studying at a gym. That type of yoga was more about fitness and only fitness. This new path I am taking is more than that.

This yoga journey is about a total ME. spiritual as well as physical.

I will post more as it comes to me. .......